LEAVING THE HOSPITAL
READY TO BREAK OUT
HOW MANY WIRES DOES AN EKG TAKE
Anshon jr....................
Mommy and Daddy and Jayshon.....................
My Dad and Alicia...........................
Alicia and Jayshon...............................
On our way to Cincinnati
OK OK I AM SORRY AGAIN. I AM OVER DENISE'S AND ALL I HAVE HEARD IS HOW BAD I AM WITH UPDATING.
WE ARE SET TO LEAVE IN THE MORNING FOR CINCINNATI TO FOLLOW UP WITH DOC DAVIES. ALICIA STILL IS BATTLING GVHD IN HER MOUTH, IT LOOKS BETTER TODAY BUT A COUPLE OF DAYS AGO IT WAS NOT LOOKING TO GOOD. SHE IS STILL ON ALOT OF STEROIDS, BUT THE PLAN IS TO START WEENING, SO MY FINGERS ARE CROSSED. ALICIA IS EATING US OUT OF THE HOUSE. HER CHEEKS LOOKS LIKE CHIPMUNKS.
ALICIA WENT TO THE KIDNEY DOC THIS MORNING AND THE BIGGEST ISSUE WAS THE AMOUNT OF PROTEIN IN HER URINE. WE WILL FOLLOW UP IN JANUARY. DOC DAVIES IS NOT TO WORRIED ABOUT HER KIDNEYS.
I HAVE BEEN FEELING GOOD MY SELF. I HAVE AN APPOINTMENT WITH MY CANCER DOC AT THE END OF THIS MONTH. I WILL LET EVERYONE KNOW HOW IT GOES (PROMISE).
PLEASE REMEMBER A FRIEND OF OURS HER NAME IS CHARISSE, I MET HER AT CAMP THE FIRST YEAR WE WENT. SHE PASSED AWAY LAST WEEK FROM FA. PLEASE KEEP HER SON ISAAC AND HER HUSBAND ALAN IN YOURS PRAYERS. SHE IS ALREADY MISSED DEARLY.
MEE-MA
Just a quick update to let everyone know Alicia has been in the hospital since Monday. Her BP is staying very high and they have found issues with her kidneys. The blood is not flowing through an artery in her right kidney. We will have a MRI done in Cincinnati next week.
Please keep some very close friends to me in your prayers, they have lost their child to FA and they need comfort and peace. Anthony Negrin and Sam Mcarthey both lost their fight with FA. They went through transplant the same time as Alicia and are very dear to me!!!!
I will update on Alicia when I find out more info.
Mee-Ma
I have had so many calls and text's and letters and now I see e-mails also checking on us, and I am sorry for the time it has taken to update. The truth is I have been avoiding the computer. It seems like every time I turned it on another one of my friends have lost their child and I just didn't want to face that.
Anthony, some one We were very close with, passed away and It has had me very depressed and I am sorry if anyone was left worrying.
Alicia is doing great, as you see from the picture she is sooooo chubby. (she has on her brothers shirt). We will be in Cincinnati on the 26th, 27th and 28th to see Dr Davies and ENT. She is so excited to see everyone.
As for myself I have been in and out of the Hospital Three times since my last update. I built up an infection in the fluid in my abdomen and since have had to have a Picc line put in and give myself my own Anti Biotics. I am still very weak and sometimes scare myself!!!! I have lost 100 pounds since June from being so Ill. I hope to be better soon.
Alicia has spent alot of time with me. The boys have been fighting fevers for two weeks and That is one thing we are hoping to avoid with Alicia. She helps me so much she is getting to be such a big girl.
Well once again thank you for all the prayers and care from everyone.
Michelle
HELLO EVERYONE AND I AM SO SORRY ABOUT NOT UPDATING SOONER. ALICIA AND I ARE FINALLY DOING A LITTLE BETTER. I AM STILL HAVE TERRIBLE PAINS IN MY SIDE BUT THE DRAIN LINE THAT WAS INSERTED IN MY SIDE TO DRAIN ANY FLUID BUILD UP WAS REMOVED LAST THURSDAY. I AM HOPING I AM NOT BUILDING UP FLUID AGAIN AND WE WOULD HAVE TO START ALL OVER, I HAVE A CT SCAN ON MONDAY TO CONFIRM THAT. I ALSO SEEN THE CANCER DOCTOR HERE I KANSAS AND I LIKE HIM A LOT. HE IS COMMUNICATING WELL WITH DR RICHARDS IN CINCINNATI. I HAVE ANTHER APPT WITH HIM AFTER THE CT. THEN ITS ON TO THE LIVER AND KIDNEY SPECIALIST FROM THERE.
ALICIA HAS A HORRIBLE COUGH RIGHT NOW. SHE SEEN HER DOC HERE YESTERDAY AND THEY TESTED HER FOR THE SWINE FLU AND OTHER THINGS BUT ALL TESTS WERE NEGATIVE!!!!!!!!!!!!!! WE HAVE BEEN SPENDING A LOT MORE TIME TOGETHER NOW THAT I AM FEELING A LITTLE BETTER. SHE IS RIGHT HERE WITH ME NOW, BOY I MISSED HER SO MUCH WHEN ALL OF THIS WAS HAPPENING!!!!!!!!!!!!
WE ALSO MOVED IN THE TIME I HAVE NOT UPDATED. MY LEASE WAS UP IN THE APARTMENT AND I FOUND SOMETHING A LITTLE CHEAPER AND WITH ME NOT WORKING I WILL TAKE ANYTHING CHEAPER.
ONCE AGAIN I AM SO SORRY FOR NOT UPDATING. I REALIZE THERE ARE MANY PEOPLE WHO CARE AND WORRY ABOUT US AND I AM SORRY. I WANT TO SAY A SPECIAL THANKS TO DIANE FOR THE CARD YOU SENT.... IT MADE MY DAY!!!!!!!!!!!!
MICHELLE
I WANT TO SAY A VERY SPECIAL THANKS TO DENISE FOR BEING THERE FOR US EVEN THOUGH SHE IS SICK HERSELF. SHE IS 100% THE BEST!!!!!! ALSO THANKS DENISE FOR KEEPING EVERYONE UPDATED WHEN YOU KNEW I COULDN'T
MICHELLE
Hello everyone this is Michelle and I wanted to let everyone know that I am ok. I have been in and out of the Hospital for the past month as Alicia has as well. We were both discharged yesterday and she is staying with Erika. I am still in a very lot of pain and I have a drain tube sticking out of the right side of my abdomin. Alicia seems to be feeling very well again but she is still on anti-biotics for the bacteris they did find. I have follow up appointments all next week and the following so I will let everyone know all of the details just as soon as I find out my self. I just wanted to Thank everyone for so many prayers and ask for them to keep coming!!!
Michelle
YESTERDAY ALICIA WAS YELLING FOR HER MAMA AND ERIKA RAN TO HER ROOM AND SHE TOLD HER MAMA COULDNT BREATH.SO ERIKA TOOK HER TEMP AND IT WAS 102* SHE THEN TOOK HER TO THE ER. HER FEVER WENT DOWN AND SHE IS FEELING BETTER NOW. MICELLE IS HAVING ANOTHER TUBE PUT IN SINCE THE NURSE PULLED THE FIRST ONE OUT. FIRST THEY WILL DO A CT TO SEE HOW MUCH FLUID IS LEFT. WELL I AM SO VERY EXHAUSTED FROM SCHOOL KIDS AND GOING FROM MICHELLE AT ST JOE HOSPITAL TO ALICIA AT WESLEY......IT DRAINS A PERSON..............DENISE
Michelle woke up alot of pain today, more than usual. So my mom took her to the ER and they did a CT and it showed some free flowig fluid in her abdomin. Her dr (she calls him dr mcDreamy) came seen her and decided to have her admitted for further testing. I dont know much right now. Dr mcDreamy said DR reddy (the cancer dr) will be there to see her tomorrow. She has anAppointment with him for friday but looks like she might be in patient. Alicia is still doing really well. Michelle and alicia miss eachother so much. They have only seen eachoter breifly a few times since we got home. Erika stopped by michelles apartment last night for a few minutes with alicia and alicia just rubbed her cheeks and head and said it will be ok and i miss you so much meemaw. Please keep the prayers going please............Denise
Michelle is doing better. We are both so glad She is under the care of drs here and not at univercity of cincinnati. Blood work on the 12th was good and kidney is hanging in there. The drtts have her on 2 different types of low doses of diaretics that the drs there took her off the one she was on and since she has been home she has lost 40 pounds of water and fluid weight. Dr may was very nice and very easy to talk to and that he is very cute was nice too. He thinks the pain she is in is from hanig 2 surgerys so close together and its going to take more than usual to heal from that. She is Having an ultra sound friday to make sure. She has an appointment with DR Reddy who will be her cancer dr next. He will decide the next step wether it be chemo treatment or treatment for hep c for liver. They will be able to kill the hep c virus cells in her liver which will keep the liver from being damaged anymore but wont repair it. The drs here say the liver is in its last quietstage but is not totally gone like cincinnati said. Alicia is with me right now and doing very well and i better go see why she is so quiet..........................Denise
The hospital released michelle on wednsday and she has an appointment with her new primary care doc on monday morning. She has 9 prescribtions and is still in alot of pain. She says she dont feel good and still feels something is not right. The dr here said her liver is in stage 4 and kidney numbers are staying stable. That is good news cuz there is a treatment for her liver to try but no way her body could handle it right now. She has also found out she has thyroid problems. because Alicia is doing great. she is seriously getting a little chubby. I kept her last night and she cracks me up because before she finished her miniburger she was asking for some noodles then she had half a burrito and topped it off with another bowl of noodles. She looks really good though. Erika is doing really good. Alicia is loving being with her mom. Thankyou God----------Denise
We got home yesterdayaroumd 1 pm and michelle is in Via Cristi St Francis room 4035 phone number is 316-291-4435. I am taking a very needed break today and staying at home. Tomorrow I am going to be there bright and early to talk to dr so ill try to update tomorrow with news. Since she has been here they have alredy ran numerous tests so i should have lits of info from dr. Alicia is also home and loving it. She is doing relly good and drove her mama crazy with the "are we almost there yet?" question during the 12 hour drive home. I want to thank every one so so much for all the prayers because I honestly believe they are the reason we are where we are today------------------------- denise
well news around here changes every other hour. yesterday about 5 oclock michelle was told she was being released to go to ronald mc donald house with alicia for a day before we all leave monday cuz michelle will be a direct admit at hospital at home. About 7 the nurse said the dr did not have time to do her paper work before he left so she still sits in hospital waiting and is now told by noon.Other good news is a pilot heard michelles story and scheduled to fly her home today but 2 hours later michelle got a phone call and that flight was canceled and now departure time is 10 am monday morning. we are keeping our fingers crossed. she is feeling better though still in alot of pain. im sure you will be reading an update from michelle soon-----------DENISE
WOW I THINK I FIGURED OUT HOW UPDATE THE SITE.I AM NOT VERY COMPUTER SMART. LETS SEE WHERE TO START. MICHELLE IS HANGING IN THERE, NIGHT BEFORE LAST SHE WOKE UP WITH CHILLS AND SPIKED A FEVER AND AS QUICK AS IT CAME IT WAS GONE. THIS HOSPITAL LEAVES ALOT TO BE DESIRED. SHE PUSHED HER BUTTON AND AN HOUR LATER JUST AS SHE THOUGHT SHE WAS GOING TO HAVE TO CRAWL DOWN THE HALL WAY TO GET HELP A NURSE CAME IN. THEY DID A TAP THENEXT MORNING AND IT SHOWED INFECTION IS BACK ALSO NOW INFECTION IN HER BLOOD STREAM. THE MED THEY ARE GIVING HER TO REROUTE BLOOD TO HER KIDNEY SEEMS TO BE HELPING CUZ KIDNEY NUMBERS ARE STAYING STABLE BUT WE HAVE BEEN TOLD ITS JUST A TEMP FIX TO FIGURE OUT HOW TO FIX KIDNEYS. SHE IS VERY FRUSTRATED AS I AM TOO CUZ WE HAVE BEEN WAITING A WEEK FOR A PILOT TO PICK UP OUR REQUEST TO GET HER HOME. NO LUCK SO FAR. SHE JUST REALLY WANTS TO GO HOME. ON A BETTER NOTE ALICIA IS DOING AWESOME. ERIKA AND ANSHON ARE ALSO DOING AWESOME LEARNIG HER CARE AND ALICIA ONLY HAS 2 DAYS TO MARK OFF THE CALENDAR AND SHE WILL BE HEADING HOME WITH MOMMY AND DADDY. SHE IS GETTING SO FAT. THE PANTS THAT SHE HAD TO HOLD UP WITH A BELT A MONTH AGO ARE NOW HARD TO BUTTON.SHE IS EATING EVERYTHING AND MAKING HAPPY PLATES FOR THE FIRST TIME IN HER LIFE. I WILL NOT LEAVE MICHELLE SO HOPEFULLY AN ANGEL IS SENT SOON TO TAKE HER HOME. I AM GOING TO PUSH THE PUBLISH BUTTON NOW AND IF I GOT THIS RIGHT ILL TRY TO UPDATE AGAIN SOON--------------DENISE
**** UPDATE****
WE ARE IN NEED OF URGENT PRAYERS, WE ARE TRYING TO GET MICHELLE HOME TO KANSAS AND SHE HAS NO INSURANCE. THEY ARE SAYING IT WILL COST $8000 TO TRANSFER HER TO THE HOSPITAL THERE!!! PLEASE PRAY!!! IF ANYONE READING THIS HAS ANY CONNECTIONS PLEASE SHOOT US AN EMAIL AT KKING5112@AOL.COM. YOU CAN ALSO EMAIL MICHELLE BUT SHE IS NOT ABLE TO CHECK HER EMAIL AS MUCH AS I.
Michelle's kidney numbers were slightly up, which is awesome, but unfortunately she is far from out of the woods. Things are slow with it being the weekend, so not much else to report! Michelle truly thanks all of you for your kind words and prayers!! Keep them coming!
I am at a loss, I do not want to live life without this wonderful woman! She is an awesome human being! I really love her and Alicia. I pray she will be okay! She is not finished here on earth, she has given her whole life to helping others! I know she has grown from this experience and I know Michelle she will in many ways use this horrible time in her life to help others.
Last I heard Alicia is doing very well, being her normal, beautiful self!! She will even be better tonight since MOMMY IS COMING!!!! YEAH!!!
Thanks again for checking in on Alicia and Michelle!
Krisstina
I am here with Michelle and she has asked me to update.
Michelle and Denise are very unhappy with the doctors. Michelle is dictating what i am typing since she can't.
What the doc said to her about the liver is that it is completely gone and it is shut down and it will never work again.
With the kidneys failing also that doesn't leave much of a chance unless they can get the Kidney numbers turned around. They are trying new meds that will help the kidneys by rerouting the blood flow.
As far as her returning to Kansas, this hospital will not release her unless it is hospital to hospital, but to has to be a medical transfer. Which they found out today it costs $8000.00.
Michelle is very upset that she can not see Alicia! She misses her so!
Alicia is doing well and Erika will be here Sunday! Thank god! They both need her so much and I know Erika needs them! Please pray for her whole family along with her! This is all so confusing and stressing! Things have been very unclear until now and is very hard on all of them. Please pray that Michelle gets to go home. They all need that!
Thanks so much!
Krisstina for Michelle!!!
Well let me start by saying, unfortunately I have very little information.
Alicia is doing well. She is preparing to head home in a week. Erika is coming in on Sunday to be trained to care for Alicia. After the training, if all is still doing well she will head home!!!! YEAH!!! Please pray all stays well.
Michelle is having more issues. Her kidneys are under stress, breathing, heart rate, and liver. We did not get any results today from the fluid. Tomorrow!! It seems her status keeps changing.
I do know tomorrow her father, step-mother, and Brother in law are arriving. They fully plan to take her home to Kansas this week, they are hoping by Tuesday. She will be immediately placed in the hospital. That is the last I heard. Since things keep changing, we will see.
She does have stage 4 cirrhosis of the liver, from an unknown cause, at this time. They are and have been saying that if they get this infection under control, she can live another 20 years with this.
I know you all are very worried and frustrated, but it has been a horrible waiting game. Please be assured that I will get the information as soon as I can. Sometimes her sister has tons of phone calls and I do not get much information until later in the day!
Please just pray for her!
Thanks so much!!! You all are a true blessing!!!
Krisstina
***UPDATE***
Michelle looks ok, not good but ok. She was very uncomfortable and tired. She was in and out.
She has a severe infection (that is infested in 50 lbs of fluid she put on since last Thursday) and it comes first on the repair list. Second the liver and third the cancer. Tomorrow they are going to attempt to remove some fluid and send to lab. They have to make sure the meds are covering it. She is not out of the woods. She could go south at any time. They said her liver is very bad and could give out at anytime, she will then die. If they can get her through this infection the hope is to treat the liver to help repair it, if not a transplant. At this point they know nothing of the sort. They can not check the liver until the infection is under control.
They did an ECHO and will get results tomorrow.
She was very uncomfortable and upset, her phone was going crazy while we were there. She was not happy. She says it is that way all the time, so she can not rest. Texts and calls at least 4 times in a 45 minute period. I will update you when they call me tomorrow with the latest.
She asked me tonight if this was the end and I told her I did not think so and she started to cry and said I have a really bad feeling. She cried when talking about Alicia and how she could not care for her any longer. I told her when she got better she could help, but it is Erika's time.
Denise will be here at least another week. She is very happy about that!
PLEASE PRAY FOR HER!!!!
She asked me to tell you all thank you sooooo much!!!! She really needs prayers and she appreciates all of you!!
Krisstina
***********************************************************************************
Michelle is still hospitalized and is not doing well. Her liver is declining, her o2 stats are low, her heart is under distress, and she has a very bad infection. Please pray she survives this!!!! They have said she would not survive a trip home right now and she will have to be here until they can get it taken care of.
Thansk
Krisstina
Alicia is doing well.
Alicia and Michelle have both been admitted! Alicia was admitted Friday Friday night due to blood in stools. She is doing better.
Michelle was admitted last night due to infection.
I have very little information right now. I know Michelle is having liver and heart issues due to fluid.
Please Pray!!!!
I will update as I can.
Krisstina
I just wanted to give everyone a quick update, I now how everyone has been so worried and wondering.
I don't want to mislead anyone, I am still in a horrible amount of pain. I am very very bruised, as the Doc puts it "it looks like I have been ran over by a bus". Today I had to go in for pain management and I got four doses of Morphine along with two bags of fluid. I stay very light headed and it is almost impossible for me to get out of bed. I have an enormous amount of blood coming from my incisions but Dr Richards said that is going to happen until the bruising goes away. He has me on two different types of Pain meds, Antibiotics, inflammatory, and anti anxiety meds. I have not been able to eat either. I am going in tomorrow for more pain management so it can help me heal.
I also found out that I am going to have to have some Chemo as soon as I heal. The Cancer was contained in my uterus but Dr Richards said he needs to make sure he got all of the cells. My family has been on me about coming home for the Chemo but I am still concerned for Alicia and do not know if that is the right thing to do. Alicia has a virus in her stool and they are still vry very runny and tummy pains now and I do not want her to have to be hospitalized at home if I can avoid it.
Erika is here and Alicia is in Heaven. Erika is a huge help as my mom and Denise were as well. I just do not know what is the right thing to do yet. I have to figure out some means of financial help if I stay through the Chemo as I have ran out of all finances. I just have a lot of thinking to do.
I will update more later. Please keep the prayers coming.
Michelle and Alicia are doing ok. Michelle is very sore.
Erika is here and they both are loving that! She is having fun with Alicia, while Michelle rests. Not much to update until Thursday, when we go back to the Oncologist.
Thank you for all the prayers!
Krisstina
I am sorry for not updating yesterday! There was not any real change. She did have one more bag of blood and was much better. She is very sore, but out of the hospital today.
Alicia was going to be released when Michelle was, but she had a fever last night that lasted thirty minutes. So that bought her an overnight stay, she will be released tomorrow. Michelle is with her now. She was sooo excited to see her Meemaw!
Michelle has her followup appointment on Thursday and Will get her results then.
Thank you for checking in!!!
Krisstina
Michelle is not going home today, maybe tomorrow. She was still sounding very out of it today. She is still not feeling up to par.
After surgery yesterday they had said she lost a lot of blood buut it was not anything to worry about. I guess last night after we left and into this afternoon, she received 3 tranfusions. All is fairly well now. She even tried to eat. She sat up a long time both last noght and today.
Please pray for her, you all know how she gets when she is not near Alicia.
Thanks for checking in.
Krisstina
Hello everyone,
This is Krisstina updating for Michelle. I apologize for the late update. Michelle made it through the surgery OK and got up to her room around 6:30PM.
Her surgery was scheduled for 11:30 AM. She did not go back until 12:04PM. They called out at around 2:20PM and said all was going well, but still working. She got to recovery about 3:05PM.
Monday when we met with the doctor, he said he was not giving a time limit to the surgery. He said he was taking as long as he needed. He had a lot of work to do and scar tissue being one BIG obstacle he had to conquer. They were removing several sites for biopsy, along with scar tissue, lymph nodes, ovaries, tubes, uterus, and cervix. They were planning on doing it laproscopically with robots. She has 4 little 2 inch cuts that are glued together. He did not want to open her up again. She still has a very large open wound on her tummy. It is about 4 inches long and 2-3 inches wide at the top closest to skin and about 3 inches deep, but looks awesome. Michelle had been praying that the robotic would work and IT DID! We are so happy! Much less healing and down time.
Boy she was very unhappy tonight! She was feeling pressure and it scared her so she was getting anxiety. We finally got her comfortable. It took about 2 hours to get her comfortable enough to sit still. Not totally but when we left at 9:00PM they were trying to get finished.
We will find out more on results in about 72 hours.
Thank you so much for your prayers and checking in on Michelle and Alicia! Pray that they both get back up to par soon and will be able to return home to Kansas!
I will be updating every evening until Michelle is able to.
Thank you Krisstina
Alicia is doing well. She was already crying for MeeMaw tonight and Michelle spoke to her all drugged up and told her not to cry she got her new tummy and would be home tomorrow! YES, tomorrow is when she should get released.
Yesterday was probably one of the best days ever. I felt pretty good and I got the surprise of my life!!!!!!! Denise arrived around ten pm and she told me to come out and help with her bags and said she had a surprise for me and when I walked out there stood MY MOM!!!!!!!!!!!!!!!!!!!!! I was so surprised and so HAPPY!!!!!!!!!!!!!!!!!!!!!!!! She came to see me through my surgery while Denise stays with Alicia. I cried like a baby.
I went to see the Surgeon also yesterday and he said that he is going to try his hardest to do the surgery with the Robot but if he did have to open me back up that he would not use the same incisions as the last surgery. He was very pleased with the way it was healing and did not want to touch it. ( THANKS KIM!!!!!!!!!!!!!!) I am on a clear liquid diet all day so I get to watch my sister and mom eat Crabs at Joes Crab Shack.
Alicia has an appointment today for more labs. She seems to be feeling fine and is just so elated that Ne Ne is here. She seems to be fine now with being admitted since Denise is going with her.
Tina is going to updated at the same time every day through my surgery ( Thanks Girl!!!!!!!!)
Thank you for all of the support.
So far so good. Alicia seems to e doing fine so please keep the prayers coming!!!!!!!!!!! I was up every 30 minutes last night taking Alicia's Temp and so far so good. She kept feeling hot to me all night but the highest she got was 99.6. I thought my thermometer was not working right so I had Kim bring me one around 6am (Kim is always awake at that time of the morning to go to the hospital with her baby) but hers read the same. Alicia is very active and she ate a whole bowl of mac and cheese for lunch so I am still holding my breathe that her own little body is fighting off what ever is going on in there.
Alicia is on the count down for Ne Ne and Mommy to get here. She barely opens her eyes before she asks me how many days til they get here. I can not wait myself. Denise is such a HUGE help and I miss Erika sooooo much!!!!!!!!!!!!!!!!!!
I had another rough night, besides taking Alicia's temp so often, I was also hurting a lot. Today is better though. Kim is doing such an Awesome job packing and taking care of my wound, Her and Amy both say how well it is looking. Now if it would only stop hurting. Amy has been a HUGE help also, she takes Alicia off my hands all the time to give me little breaks... They are both such a HUGE support.
Tuesday Tina and I go for one last appointment before the surgery. I am so thankful for Tina being there, she has been my ears and she so understands all of this and can explain it to me in English.
Please keep praying for Alicia not to get sick. We have an appointment at 8:30 in the morning so hopefully her counts have went back to normal. I will update after her appointment tomorrow.
Alicia had her clinic appointment today, the good news is she is starting to gain weight, her stools are loose again so I hope she doesn't start to lose is again. The part I am worried about though was her CBC. The Nurse, Paula, just called and said Alicia's white cell count is elevated to 22.3 and her Anc is elevated again to 19,000. This is always a trend for Alicia before she gets sick. They also said her Liver numbers are elevated again which also has me very concerned. They also did a CRP test which shows the inflammation in her body and it was elevated as well. I don't have good feelings about this, Please pray that this does not mean Alicia is getting sick again.
Last night was a horrible night for me, I was in so much pain that I barely slept. ( I haven't slept well in weeks) If Alicia gets sick this means more nights on those very uncomfortable beds at the Hospital. The last stay on those beds is when I ripped open my wounds. I am not concerned about myself as we all know. This is about Alicia and I just pray she is not getting sick. She acts fine right now but that is also the trend before the storm.
I am so counting the days before Denise gets here so I can concentrate on getting myself through this surgery which I am scared to death of.
Please keep Alicia in your prayers today!!!!!!!!!!!!!!!!!!!!!
I have not been feeling well at all the last couple of days. I am glad that the surgery is right around the corner so I can finally get it behind us, but I am also very very scared. My wound has been hurting a lot lately but Kim and Amy, my close friends here at the RMH both say it is looking very good. I have been sleeping a lot lately.
Denise will be here a week from today so that will help me out a lot. Erika will be here on the 12th and I can not wait. I miss Erika a whole lot. My Mom has been taking care of things back at my apartment and I am so greatful to her!!!!!!!!!!!!!!!!
My FAmily has given so many words of encouragement and I do not know what I would do without them. Thank you so much!!!!!!!!!!!!!!!! I can't forget my friends outside of my FAmily because they have been a huge support also!!!!!!!!!!!!
Alicia is doing fine. She has a check up with Dr Davies tomorrow. She seems to be gaining weight since she has been on TPN, and her stools seem to be improving a small amount. Alicia is not liking the idea of having to go to the hospital when I do. She doesn't understand why she has to go if she is not sick. She keeps saying she don't want to go and she is scared, but once I tell her Ne Ne will be with her she says ok. I just hope it isn't for long.
Once again thank you for so much support and prayers. I will update more when I am feeling a little better.
Well once again I am sorry for the lack of updates, I spend most of my time on my back in bed if Alicia is not demanding my attention. I went and met with Dr Richards yesterday and the st date for the Surgery is on July 8th at 9am. I am still in a lot of pain since I ripped open but one of my very close friends Kim is changing the dressing twice a day and she is doing an awesome job. Every doc that has looked at my wound has commented on how well she id doing and how well the wound looks. It is not draining and has no infection which I owe all to Kim. Thank you so much girl!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! She is a Nurse by practice so that helps a lot also.
When I left the appointment yesterday once again I was worrying because there were days in between the surgery and when Erika would be here. Another one of my close friends, Amy, said she would stay with Alicia along with Tricia another friend of ours but once again Denise has came to my rescue!!!!!!!!!!!!!!!! I guess she had already had it planned to be here for the Surgery and to stay with Alicia til Erika got here. My Sister is the BEST!!!!!!!!!!!!!!!!!!!!!!!!!! Thanks Denise, I promise to be a better patient this time!!!!!!!!!!!!!!!!!!!!!
My mom is still holding it all together back home so I can not forget to thank her. Mom you are awesome a have taken so much off my mind. I can't wait to be "Roomies" I also want to that Tina for everything once again and Dianne for being so much support and all of my FAmily for so many messages and words of encouragement!!!!!!!!!!!!!!!!!!!!!!!!!!!
Alicia is doing great. She is loosing a lot of weight so they put her back on TPN which is an IV nutrition. She has all of her energy back and is being "Alicia"
Thank you so much for the prayers and support!!!!!!!!!!!!!!!
Well we are back at the RMH. They let Alicia out straight from ICU to our room at the RMH. The word was they were short of rooms on the BMT floor. Alicia seems to be doing well again. She is still having problems with her runny stools but all of her cultures are coming back negative so we still have no reason as to what happened earlier this week. She has an appointment tomorrow with Dr Davies so we might learn more then.
I am still in a lot of pain but it is getting a little better. My friend Kim is changing and packing my wound twice a day. It is very uncomfortable to get done but I feel so much better with her doing it. I have an appointment with the cancer doc on Thursday so I should know when the surgery will be after that. I am soooooo scared. They said that I will probably have to use a wound vac in order for the wound to heal after surgery.
I want to thank everyone for all of the prayers and a special thanks to Dianne and her family for the gift you sent me!!!!!!!!!!!!
I will update soon
I FINALLY GOT THE INTERNET TO WORK HERE IN ICU. THANKS TINA FOR COMING TO MY RESCUE ONCE AGAIN.
I CAN NOT BELIEVE ALL OF THE BAD LUCK WE ARE HAVING LATELY!!!!!!!!!!!!!! I AM ALMOST SCARED TO WAKE UP JUST FOR THE FEAR OF NOT KNOWING WHAT WILL HAPPEN NEXT!!!!!!!!!!!
ALICIA IS DOING A LOT BETTER. WE ARE STILL BATTLING HER BLOOD PRESSURE BUT HOPEFULLY WE WILL BE MOVED TO THE BMT FLOOR TOMORROW.
WELL THE DAY STARTED FOO CRAZY FOR US AGAIN. I WENT TO THE RMH TO TAKE A SHOWER AND JUST AS I WAS ABOUT TO GET IN I BENT OVER AND ALL I FELT WAS MY WHOLE STOMACH RIP COMPLETELY OPEN. YES I AM FOR REAL!!!!!!!!!!!!!!!!!!! BLOOD WENT EVERY WHERE AND OFF THE EMERGENCY ROOM I WENT. MY WHOLE ENTIRE INCISION WAS RIPPED OPEN. THEY HAD TO CALL THE SURGEON WHO DID MY SURGERY TO COME LOOK AT IT AND SHE SAID THEY COULD NOT CLOSE IT DUE TO THE RISK OF INFECTION. THEY HAD TO PACK IT WITH GAUZE AND I HAVE TO GO TO THE CLINIC IN THE MORNING FOR THEM TO RE-PACK IT. SO NEEDLESS TO SAY I AM COMPLETELY OPEN AND IN A LOT OF PAIN AGAIN.
TOMORROW IS ALICIA'S ONE YEAR MARK SO I AM PRAYING IT WILL BE A BETTER DAY. WHO WOULD OF THOUGHT THAT ONE YEAR LATER WE WOULD BE SITTING IN ICU. I AM THANKFUL THOUGH THAT WE ARE TOGETHER AND ALL WE CAN DO IS TAKE IT ONE DAY AT A TIME!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
PLEASE KEEP US IN YOUR PRAYERS, IT HAS TO GET BETTER!!!!!!!!!!!!!!!!!
ALICIA MEE MA LOVES YOU AND I AM SO PROUD OF YOU!!!!!!!!!!!!! HAPPY SPECIAL DAY BABY!!!!!!!!!!!!!!!!!!!!!!!!!
Hello It is Krisstina again for Michelle,
Michelle asked for me to update, since she does not have the Internet right now. Alicia is in ICU. She started vomiting and diarrhea last night and had blood in stools. The docs told Michelle to watch her. So this morning her temp went up and she took her to the ER. While there, her blood pressure started dropping and they took her into a trauma bay. Her blood pressure bottomed out at 59/30. Her temp got to 102. She has blood in stools and her tummy was all sucked in, Michelle said you could see every bone. She was taken to ICU. Her BP was low for awhile and then this evening was too high. She will be there for a couple days before going back to the BMT unit. She will have to be off the Dopamine first.
They are doing tests for all symptoms. One of us will update when we know more.
Please pray for her and Michelle.
Thanks
Krisstina
Hello everyone!
This is Krisstina updating for Michelle, per her request.
Today we went to her follow-up to have the remaining staples removed and there was one of the staples that should have stayed in a little longer, but it was healed enough to just place a butterfly stitch on it. She has about six or seven of them and should get them off, if they do not fall off first, and have a wound check by Monday.
They gave us a copy of the pathology report and it shows she has Stage 1 endometrial adenocarcinoma. They found it in 3 places. All were showing stage 1, which is very promising!!!!!!
We will have a consult with her Gyno-oncologist. It should be within the next week. Since it is on the lining of the uterus, she will be getting a full hysterectomy. The good news is that most of the time with stage 1 they get it all with the hysterectomy. They will be taking biopsies of many places to make sure the cancer had not spread to her stomach and other organs. We will know more next week.
Michelle is doing well. She is felling a little better knowing a little more information, not a lot but a little.
Please pray for her all goes well for both of them and some peace for Michelle!
Alicia is also doing well!
I am sorry I have been able to update myself, the past week has been very hard on me and all a big blur. I want to stress how very Thankful I am to Tina for keeping everyone updated. I am truly blessed to have a friend like her. She has went over and beyond for me in more than many ways. I Love you Tina and thank you for EVERYTHING.
I also want to thank Denise for dropping everything to be here for us. I love and owe you so much Denise. You are the very very best friend in my life and I do not know what I would do with out you.
I also want to thank my mom for all of her support!!!!!!!!!!!! I would have nothing if it weren't for you mom. Thank you sooooo much. You have taken so much off of my mind and I love you very much!!!!!
Like I said this whole week has been a big blur and a lot of confusion. Today I am not in as much pain as I have been so I feel it is getting better. I don't know where to start so I will start at the beginning.
I woke up from my nap last Friday in an enormous amount of pain. I usually can tolerate pain so I tried to wait it out but it only got worse so I had Alicia go get a friend of mine her at the RMH and it was down hill from there. Another friend got me to the Emergency room and I could barely even sit up. When I finally got back they started an IV and gave me Morphine, which I must say was AWESOME!!!!!!!!!!!!!!!!!!!!!!! They then did a CT scan and it showed a very large cyst on my right ovary so they wanted to do an ultra sound also. The cyst took over two screens on the ultra sound to see it all, it was HUGE!!!!!!!!!!!!!!!!!!!! They admitted me and the next morning an OBGYN and Surgeon came in and told me it needed to be removed. By then I was on a pain pump so every six minutes i could push a button and was getting a dose of dilota (sp??) so I was in no pain at all and could not really remember much of what was going on. I did know that my sister was on the way and that Alicia had been admitted to childrens by the order of Dr Davies. I don't remember much from that point, I do remember my friends from the RMH being there (Kim and Amy and Shawn) which they have told me that I was saying some crazy things. Mostly about caring for Alicia. They said kept repeating how she likes her tator tots and I was worried that she wouldn't get them.
I also do not remember much after surgery, Denise said she had talked to me in the recovery room which I do not remember at all and I know my friends were there the whole time and in the room waiting when I got back. They took turns checking on Alicia which I thank them so much for. They helped me sooooo much!!!!!!!!!!!!!!!!!! I was told that the cyst was 27 inches long by 12 inches wide and they had to drain 4 liters of fluid off of it to even be able to remove it. I had 22 staples up and down my tummy. I was still in a lot of pain and on the pump til the following day. Denise arrived around ten that night and her and Tina, Keith, Jacy and Cameron stopped at the hospital where I was and I do remember that. I was so at ease then because I knew Alicia would not be alone any more. The next day they took me off the Pain pump and started me on oral pain meds, they got me out of bed and Denise helped me shower. At that point I knew I had to get to Alicia so I insisted on them releasing me the next day. Denise stayed and was a HUGE help the whole week!!!!!!!!!!!!!! Alicia kept telling everyone my owie was not in my butt any more it was on my tummy.
Now the hard part........................... when they removed the cyst they said I also had a something else hanging from my cervix which they removed along with a biopsy they took from my cervix and it was sent to the pathology lab. Friday when I went to get the staples removed which they only removed half because some were oozing and I am very very bruised, any way the lab reports showed that what they removed and the biopsy both showed cancer. They said it was vital that I have a complete hysterectomy done asap. I was at a loss of words and told them I was not going to do anything or make any decisions until I talked to Dr Davies. My first and utmost concern is Alicia. I can not even bare of the thought of her going through anything without me. I know and have been told a million times in the past few days that if I do not take care of my self that I will not be here for her anyway but that does not matter to me. I know that I will be in the hospital for at least a week and Dr Davies told me Friday that she wants Alica to be admitted to Childrens and under her care while I go through this. Alicia has not ever been alone even for one night her hole entire life. I know they will take care of her but I can not even stand the thought of it. Erika will be here I know it so I decided to wait until she can get here to be with Alicia. She will also be here for a week after. My family all want me to come home but it is not an option.
I will have more answers after my appointment on Monday. I have written down a list of questins and I will let everyone know more than. I ask for many prayers please. This all is so very hard. I thought we were just coming here for a few weeks and we would go home. I was to start my job back this week. I came with nothing and I needed badly to return to work. My family has been a huge support and I thank my mom and Denise so much.
PLEASE PRAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
*****UPDATE******
I just hung up with Michelle and she said her head is just spinning. She said she thought she'd be better tomorrow. She has been unable to update because she has been in pain and not getting around well. She said she may try tomorrow. The cancer is on the cervix. They have no idea what stage or where it has spread or even if it has. They did say they thought she has had it for awhile. She is so unsure of what she is going to do and how to go about care with Alicia, so please pray god leads her in the right path. She has a follow up appointment on Monday.
Her sister, Denise is leaving tomorrow because she has had some medical issues of her own and needs to get back home for treatment.
As for Alicia, she is doing well and tehy did a scope today to check for gvh in the GI tract and DID NOT FIND ANY!!!! YEAH!!
Thank you all so much for the encouraging words and prayers!
Krisstina
This is a very difficult update for me to make. Michelle had her followup this morning and was informed she has cancer. I have no idea where, what stage, or how much. Alicia is having a scope this afternoon for GI so I will update with all the information I have tonight! I hate to leave this hanging but Michelle asked me to ask for prayers! She really is distraught and I have only spoken with her by text. Please respect her privacy during this time and leave her messages on here or email. She is in a place right now where she is not ready to speak with anyone.
Thank You so MUCH!!!!
Krisstina
Michelle is out of the hospital and back with Alicia!!! She is very happy about that! She said she is in a lot of pain and trying to rest.
Thank you all so much for your prayers.
Krisstina for Michelle
Hello,
Just wanted to give you all an update. Michelle is doing much better today. She switched pain medicine after we left last night and it knocked her out. Her sister Denise sat with Alicia and will continue to do so until Michelle is better. Alicia is however required to be inpatient to make sure she gets the care she needs until Michelle is back at the RMH.
I talked with Michelle a little bit ago and we discussed her weight gain during transplant being from the tumor. Her oxygen level is around 93 and they keep weening he off saying they just want it to stay above 92. She is on a weaker pain medicine today. She is feeling better today, Her catheter was removed, she showered (with the help of her sister), and she changed clothes. She says she is still having alot of trouble moving.
She asks for prayers so that she can hurry back to Alicia, she is really missing her and wanting to get back to her. Her sister, Denise just updated me and said Alicia is a little confused but doing well!! She just wants her Meemaw. She also asks for prayers for Michelle, she needs them both in the same place to give more efficient care. She has some health issues of her own and will need extra prayers to stay strong.
Thank you so much for checking in.
Krisstina
Oh yes! I forgot Michelle wanted me to tell that she is doing well, she delivered a baby that weighed 9 lbs. and was 27" long. The baby does not have FA! She never seizes to amaze me with her upbeat attitude!
*****UPDATE*****
Just dropped Denise off to Alicia.
We picked her up at the airport, went to see Michelle, and then took her to rmh to drop off her things, and finally she reached Alicia!
Michelle is doing ok. She is in a lot of pain, itchy and a little low on oxygen. So she had them change the pain meds while we were there and they gave her benedryl. She is being her normal Meemaw self and dying to get back to Alicia. They say if she walks and uses the restroom she can get out Monday. They removed a cyst that was on her ovary. It was fluid filled about 4 liters to be exact. They also removed a fibroid from her cervix. No cancer!!! They did say it had been growing for years! She has not been to the doctor for 23 years!!! Since she had Erika! For those of you that know me, you know what I said to her. She laughed and said I bet you are updating the site and telling them you have been all over me, I told her not yet! lol! I will update tomorrow or as I hear anything new.
Thank you so much for your prayers and support!
Krisstina for Michelle
Just spoke with Michelle and she is doing ok, very sore and tired. She said her phone was going off the wall, She asked me to update the site. Please remember that she needs to rest and as soon as we know something new she or I will update as soon as possible. She really just needs to rest today.
Thank you so much for your concern and prayers she really appreciated all of it. I am sure in a couple days with prayer and rest she will be up to talking more.
Thanks again.
Krisstina
Michelle is out of surgery and doing well. I will update more as I hear. I will be picking her sister up at the airport about 9 pm and we will be going up there at that time. Last night Michelle was telling her family to just wait but her sister called and she decided to come. I got the flight booked and she will be taking care of Alicia while Michelle is down. The incision they made is said to be very big, so she will be down for a little while. Keep praying this family is going through so much right now!
Thanks for checking in.
Krisstina
URGENT NEED FOR PRAYERS!!!!
As we speak Michelle is in surgery. Please pray all goes well.
yesterday late afternoon Michelle was in an enormous amount of pain and eventually went to the hospital ER. They did some tests and found a 27" cyst on her ovary, they are removing it now. I will update when I know more.
Krisstina
OK OK OK MOM AND KELLI............................. SORRY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
My Mom and my sister have been on my butt to update and I have been slacking again SORRY!!!!!!!!!!!!!!!!!!!!!!!
Alicia is still doing fine except her poop is still very very bad!!!!!!!!!!!!!! Doc Davies said we will be here until she can get her tummy fixed. They are doing more tests so hopefully we will know something soon. The last x-ray showed her colon is healing good though so that is good news. I still do not see us going home anytime soon though. We did get some AWESOME news today... Our insurance is going to pay 100% of Alicia's hearing aid. It should be here Wednesday. I am so excited for her!!!!!!!!!!!!!!!!!!!!!!!
Today she has her Biopsy so now is the hard part and the waiting game.
Now on to Normal news for Alicia...... As everyone knows nothing shocks e when it comes to her so I was not shocked when Alicia cut her hair the other day. YES she cut her hair. She got the scissors from my purse and cut herself some bangs. Leave it to her. She also embarrassed me the other day so so so bad. I had woke up and my monthly visitor had came ( LOL sorry men) anyway Alicia had came in and she thought I was hurt and she was so worried. Well we were in the elevator on our way down to go to the Hospital to get her labs drawn and there was an older lady in the elevator with us and Alicia went to telling her that we were going to the hospital to get a band aid cause mee-ma' butt was bleeding. I was soooooo embarrassed!!!!!!!!!!!!!!!!!!!
LEAVE IT TO ALICIA!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Alicia had her hearing test done on Thursday and her hearing has gotten worse. She has 75% loss. Alicia did so well during the tests!!!!!!!!!!!! Then a lady came in to talk to me about a Baha hearing aid. Alicia took another test with one on and her hearing went to 15% loss. I was sitting behind her where she could not see me so I whispered her name. i mean i really whispered and I about fell over when Alicia turned around and looked at me and said what....... SHE HAS TO HAVE ONE!!!!!!!!!!!!!!!!!!!!!!!!!!! They are working now with the insurance to see if Alicia can get one. it was awesome!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Alicia also had an EKG/ECHO done on her heart and a scan done on her bones to check the density of them for any damage done by the chemo. Thursday they will do the Biopsy and also clean her ears to see if they can get a little of her hearing back. I am hoping to be home by her Year "Special day". Her Electra lites are still out of whack and Dr Davies still has to talk to her Pediatrician for a follow up plan back home so keep your fingers crossed!!!!
I will update more when the results start coming in.
We had an appointment today with Dr Davies which we had another x-ray prior to and she said it looks a lot better!!!!!!!!!!!!!!!! Alicia still has loose stools but they have slowed way down. She should only be on the antibiotics for a couple of more days for the bacteria and it should be all uphill from here.
Dr Davies said she still wants us to stay in Cincinnati for a while to watch her after the antibiotics are done and we are still planning her year work up for the end of next week. The big issue is the follow up care from home. Dr Davies said that we have to come up with a different plan before we can go home. Alicia's Pediatrician is an option and Dr Davies is calling her this week.
I will update more when I have any news. Thank you for the prayers once again, God defiantly heard them all.
Alicia is doing a lot better. They started her NG feeds yesterday which she tolerated very well. The plan now is to let us go to the RMH, but to stay around Cincinnati for a while, which I am OK with. The closer to Dr Davies, the better.
The Nurses and Doc's have all been so great. I am so very glad we got Alicia here, who knows what would of been the outcome if we were still in Kansas. The Doc' in Kansas were great also but by any means the care for a child that has had a Transplant is the BEST in where the Doc's know about FA!!!!!!!!!!!!
Dr Davies already has an appointment set up with Alicia for Tuesday which she is going to have another x-ray done on her stomach to see if is better. Alicia still has her year post transplant workup which was scheduled before all of this came up. Dr Davies also wants Audiology to see her while we are here also.
I am not sure if the room we are in at the Rmh has Internet access, if not my friend across the hall does so I will update more soon. Thanks for all of your support.
P.S.
Stacy was laid to rest yesterday at 2pm. I talked to his mom and she said it was very beautiful.
I am at a loss of words. Today FA is taking the life of someone I am very close to. Stacy Hunningcutt will be placed in Jesus's arms at 7pm tonight. His Mom and Dad made the decision this morning that he has suffered enough. Please say an extra prayer for them this evening at 7pm.
Stacy baby Mee-ma is going to miss you so much. I am going to miss those big hugs you gave me and I am going to miss watching you run over everyone at the RMH on your tractor. I am so blessed that I got to know you and you are so special. Fly High baby!!!!!!!! Where you are going there is no more FA, no more pain, no more needles, no more medicine, only happy days from now on. I love you Stacy R.I.P
Mee-ma
Alicia is resting so I have the opportunity to update. Any and every second she is awake we are arguing about food. I am so scared she might start eating my arm or something. She is begging everyone that walks in the room to Please give her one bite. It hurts so bad to tell her she can't. I even thought of sneaking her a spoon full of broth but the first time i do i would get caught!!!!!!!! The Nurses here are WONDERFUL and Megan who has been with us the last couple of days is really stressing to the Doc's how Alicia is having a very hard time with this. The bad thing is Alicia didn't eat three days prior to this happening (by her choice) so we are actually going on a week without food. I am trying everything to side track her and keep her mind occupied and busy but it is not working. Even Sponge Bob is not helping me!!!!!!!!!!!!!!!!!!!!!!!!
The did start her IV (TPN and Lipids) nutrition yesterday which makes me feel better knowing she is getting the protein and calories and nutrition she needs.
They also started another Anti Biotic yesterday for the Bacteria in her stool, and this one is oral. I flush it with sterile water so I am trying to use a little extra to calm her stomach for the few minutes it will. The Doc's have not rounded yet so hopefully we will have some good news when they do.
I do not know if I mentioned in my last post that I went and seen Stacy Yesterday. I could not help but just crying when I seen him. He looks sooooo tired. The Docs told her that he was loosing blood flow to his left leg and if it got any worse they would have to amputate and Michelle said that there was no way she would let them start taking off his limbs ( i am bawling lie a baby) I spent every moment I could with his mom yesterday while her husband was gone and I got the feeling she is just about ready to put Stacy in Jesus's arms. She told me that she held his hand yesterday and told him that if he was tired to just show her a sign and she said a tear rolled down his cheek. She said she told him it was Ok and that Mommy and Daddy will be Ok and that he didn't have to keep pushing and hurting and that Jesus would take him to Grandma. I am just so sad for my friend. We cried together and she was begging for the strength to let go. His twin sister is here today but the Hospital will not let her up to see him with all of the tubes hooked up. (which is probably best) I have not talked to her today but as soon as I do I will update again today so you can check later this afternoon for another update. I told Michelle that A very special friend of mine who also has children with Fa posted about Stacy on the group and that many many many people she does not know is praying non stop for her whole Family. Michelle does not have a computer and is not even on the group, She said she didn't even know it was there but she wanted me to Thank everyone so much she said.
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